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How One Boy’s Fight With Epilepsy Led To The First Marijuana-Derived Pharmaceutical

Evelyn Nussembaum and her son Sam Vogelstein pick up a six month supply of Epidiolex from the experimental pharmacy at UCSF.

The first prescription medication extracted from the marijuana plant is poised to land on pharmacists’ shelves this fall. Epidiolex, made from purified cannabidiol, or CBD, a compound found in the cannabis plant, is approved for two rare types of epilepsy.

Its journey to market was driven forward by one family’s quest to find a treatment for their son’s epilepsy.

Scientific and public interest in CBD had been percolating for several years before the Food and Drug Administration finally approved Epidiolex in June. But CBD — which doesn’t cause the mind-altering high that comes from THC, the primary psychoactive component of marijuana — was hard to study, because of tight restrictions on using cannabis in research.

Sam Vogelstein’s family and his doctors found ways to work around those restrictions in their fight to control his seizures.

Sam’s seizures started in 2005 when he was four years old. It’s a moment his mother, Evelyn Nussenbaum, will never forget. The family was saying goodbye to a dinner guest when Sam’s face suddenly slackened and he fell forward at the waist.

“He did something that looked like a judo bow after a match,” says Nussenbaum.

Two months passed before Sam had another seizure, but then he started having them every week. Eventually he was suffering through 100 seizures a day.

“When they were bad, they were once every three minutes,” Nussenbaum says.

A roller-coaster ride

Sam was diagnosed with epilepsy with myoclonic-absences, which is characterized by an abrupt unresponsiveness and then sudden body jerks. The episodes were quick, but dangerous.

Dr. Roberta Cilio, neurologist at UCSF, proudly tells her patient Sam Vogelstein he is cleared to drive a car. Lesley McClurg/ KQED hide caption

Dr. Roberta Cilio, neurologist at UCSF, proudly tells her patient Sam Vogelstein he is cleared to drive a car.

Lesley McClurg/ KQED

The electricity in Sam’s brain would misfire for about five to 20 seconds, enough time to fall down stairs, plunge face first into a dinner plate, or crack his head on a window.

“I don’t remember a lot of it really,” says Sam.

He does remember the barrage of medications his doctors put him on. Some helped briefly. Others triggered hallucinations, full body rashes and uncontrolled anger.

“Sam is a pretty gentle person, ” his mother says. “We put him on one medication and it made him angry, and he started punching kids. And it was like, ‘Oh my God, this is not my kid.’ “

More than 3.4 million Americans have epilepsy, according to the Centers for Disease Control and Prevention, but treating the disease is often a riddle doctors find difficult to solve.

Sam struggled to read, to write, to solve math problems and Nussenbaum watched her son fall further and further behind in school.

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Life for Sam was like a bad cell phone connection: Every few moments the signal dropped out.

“It was scary,” Nussenbaum says. “I would often cry in my shower or I would drive up to the top of Grizzly Peak [in Berkeley] and sit in my car and scream.”

Pushing for access

In 2011, Nussenbaum came across an article in a British medical journal about a small seizure study on rats. The researchers successfully treated the rodents with CBD.

“I thought, ‘My son needs access to that,’ ” says Nussenbaum.

But, seven years ago, pure CBD was not easy to get. Many states have since legalized medical marijuana and CBD is widely available at dispensaries and on the internet, but it is still classified as a Schedule 1 drug by the U.S. Drug Enforcement Administration which means it’s illegal under federal law.

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Then, Nussenbaum learned about a British pharmaceutical company – GW Pharmaceuticals — that was making a medicine derived from highly-concentrated CBD to treat multiple sclerosis patients. After months of phone calls and emails from Sam’s parents, the company agreed to let Sam try the drug, in the U.K., under a doctor’s supervision for two weeks. The family flew to London shortly after.

“After one day his seizures were down to 30,” says Nussenbaum. “After two days they were down to ten. After three days he had one seizure.”

Sam didn’t suffer any side effects.

Back in the U.S. Sam’s parents needed to find a way to keep getting the drug. They collaborated with Dr. Roberta Cilio, a neurologist at the University of California, San Francisco. They petitioned the FDA to allow Sam to use the drug under a compassionate use program. Four months and hundreds of pages of documents later, the FDA allowed Sam to enroll in his own one-person trial at UCSF.

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The DEA was a little more cautious. One day two agents knocked on Cilio’s office door. After hours of questioning, the two men requested she store the medication in a giant safe weighing close to 1,000 pounds.

According to GW Pharmaceuticals, Sam was the first patient in the world to receive Epidiolex.

An expanded trial and varying results

Inspired by Sam’s success, Cilio, and other clinicians, started trying Epidiolex on other patients. In 2015, she and several co-authors published a study in Lancet Neurology that included 214 patients with treatment-resistant epilepsy, all children and young adults.

For most patients the results were not as dramatic as they had been for Sam. Seizures dropped in 36.5 percent of patients, which is about the same success rate as other seizure medications, Cilio says.

And some patients experienced side effects like fatigue, diarrhea and convulsions. Cilio doesn’t know why CBD transforms some lives and other patients don’t respond at all.

“The studies that are out are mostly short term,” says Cilio. “We need to learn who the best responders are. Of course, we know this is not a miracle drug.”

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There have been other trials of CBD oil for epilepsy, which have shown that the substance is helpful for a portion of patients. Several states have legalized CBD oil specifically for the treatment of intractable epilepsy or seizure disorders.

And as NPR has reported, CBD has gained popularity with consumers as a remedy for a variety of other ailments. But the products that are available over the counter or in medical cannabis dispensaries, aren’t regulated the way pharmaceutical drugs are, so the consistency and dose can vary widely.

The FDA’s decision to approve Epidiolex means that epilepsy patients will have access to a pharmaceutical-grade drug, which delivers a high-quality, consistent dose of CBD, says Dr. Robert Carson a pediatric neurologist at Vanderbilt University who treats patients with epilepsy.

Unanswered Questions

Epidiolex still has to get over one regulatory hurdle. The DEA needs to reclassify CBD so it is no longer considered a Schedule 1 substance. Drugs in this category are considered to have no medical use and a high potential for abuse. The FDA’s approval of Epidiolex means CBD no longer fits that category and the reclassification is expected some time in the fall.

Patients will need a prescription to get the drug. GW Pharmaceuticals has not released a price yet. And Sam’s mom, Evelyn Nussenbaum worries that some insurance companies might not cover it.

In the meantime, Sam still gets his drugs from the investigational pharmacy at UCSF. One day he hopes he’ll be prescribing the medication to patients like him.

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“I want to be an epilepsy doctor,” Sam says.

First he’s working on his driving license. Dr. Cilio just cleared Sam to get behind the wheel. He’s 17 now and hasn’t had a seizure in more than two years.

2-Year-Old Celebrates Being Seizure-Free After Using Hemp Oil

In Illinois, a toddler is now seizure-free after using hemp oil. His story is a triumph for both himself and his parents. And thankfully, it’s not at all a fluke. Now that more research is being conducted on medical cannabis, greater numbers of patients are finding relief thanks to the plant.


Before we talk about getting seizure-free after using hemp oil, let’s go over what seizures actually are. According to the Epilepsy Foundation, seizures are “sudden surge[s] of electrical activity in the brain.” These surges often cause convulsions throughout the body and may even cause a loss of consciousness.

However, there are few different types of seizures, broadly categorized as focal seizures and generalized seizures. While not every type of seizure causes full-body spasms or a loss of consciousness like you would commonly see in the media, it’s important to be aware of seizure symptoms and treatment.

Epilepsy is the most common cause of seizures, but other factors, like a head injury or high fever (especially in children), can cause them. Epilepsy is a chronic neurological disorder that can affect anyone and can be either congenital or can stem from an illness or injury.

Treating Seizures With CBD

While epilepsy can range in severity, most patients find the disorder manageable with medications that their doctor prescribes for them. But what if those medications don’t work or have even worse side-effects?

For those with epilepsy who need a better medicine, Dr. Mary Jane might be the answer.

With the continuing research conducted on medical cannabis, there are now doctors who prescribe it for patients suffering from epilepsy. And a number of these sufferers are pediatric patients. One such patient is Silas Algire. He’s a two-year-old living with his parents in Illinois. He is now seizure-free after using hemp oil administered by his parents. We got in touch with his mother, Kiana, to learn more about their journey.

Silas And Kiana Algire

“He first started having seizures a little bit after he turned one,” she said. “The first neurologist we went to said that he had breath-holding spells, which just didn’t make sense, so we went for a second opinion. The second neurologist said, without a doubt, [that Silas had] seizures and diagnosed him with epilepsy.”

The doctor prescribed Silas the drug Trileptal. Kiana recounted that it made her baby extremely fussy. And it didn’t stop his seizures.

By chance, Kiana had a friend whose son has infantile spasms. Her friend introduced her to the idea of treating Silas with CBD oil and introduced her to the nonprofit organization ECHO Connection. ECHO Connection works to educate people about the healing powers of cannabinoids and even gives charitable donations of CBD products and/or financial aid to patients and caretakers in need. The company HempMeds provides many of the CBD products that ECHO Connection distributes to charity-receiving families—including Real Scientific Hemp Oil, which is what Silas takes.

Kiana explained that she gives Silas a “Cheerio-sized” amount of CBD oil mixed in with his breakfast every morning. He’s only had one seizure since starting the regimen. And it only occurred because he hit his head.

Kiana also told us that when Silas first started having seizures, he had mild developmental delays. But ever since he started taking CBD oil, he’s been a full year ahead in his development.

Final Hit: 2-Year-Old Celebrates Being Seizure-Free After Using Hemp Oil

Silas isn’t the only one who is now seizure-free after using hemp oil. With the advances in medical research, more and more patients with epilepsy are turning away from traditional anti-seizure medications in favor of medical cannabis. And many of those patients are kids. The deviation is mostly because of ineffective anti-epileptic meds. And undesirable side-effects that negatively impact the patient’s quality of life.

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For the vast majority of patients, medical cannabis does not have the level of side-effects of traditional pills.

“Before, I never understood why people would not just use the medicine that doctors gave them,” Kiana said. “But then it happened to my kid. I understand now.”

Cbd oil made for convulsions

Supplementing with CBD to help with seizures and similar debilitating symptoms of epilepsy, is becoming increasingly popular. Here is what you should know about CBD for these conditions.

Regain Control

CBD has gotten a lot of attention locally and internationally for its medical use in the treatment of epilepsy symptoms and other conditions that result in seizures. In fact, June 2018, also saw the U.S. Food and Drug Administration (FDA) approve CBD for the treatment of seizures in two extremely hard-to-treat forms of epilepsy: Lennox-Gastaut syndrome (LGS) and Dravet syndrome. In 2019, further reviews have indicated a good response in patients (Krithiga Sekar, Alison Pack, 2019).

Many of these developmental and neurological disorders can begin early in childhood and patients are often characterised with physical and cognitive deficits that can affect their entire lives. These kinds of seizures are usually difficult to control and require a strict regimen of medications. Studies have started to reflect that CBD, taken alongside other anti-seizure medications, reduces the frequency and severity of seizures in people who have these disorders.

Always note, it’s critical when introducing any supplements to a prescribed regime of anti-seizure medications, that you should only do so under the guidance of your doctor or veterinarian.

CBD for Seizure Control

Over the years, early evidence from laboratory studies, anecdotal reports, and small clinical studies suggest that cannabidiol (CBD) could potentially help control seizures. This is evident in both humans and even pets like dogs. A multitude of CBD-containing products are on now available on the market, and many people report aid with relief or improvement in their pet’s condition. When used in conjunction with proper treatment, CBD has been reported to reduce the frequency of convulsive (tonic-clonic, tonic, clonic, and atonic) seizures in patients of varying ages (J Epilepsy Res. 2017).

When conventional treatments do not work to control seizures, which happens to be the case for roughly 30% of epilepsy patients, it’s reasonable to consider supplementing with CBD oil. However, this should only be considered after a thorough evaluation by a specialized epilepsy medical professional or veterinarian who may consider all possible treatments with oversight on the patient’s existing medications.

CBD & Epilepsy in Dogs

There is great interest in evaluating the effects of CBD in treatment-resistant epileptic canines. An ongoing study (Efficacy of Cannabidiol for the Treatment of Epilepsy in Dogs) has even recorded that 89% of the dogs that were dosed with CBD showed a marked reduction in the frequency of seizures.

Pure, High-Quality CBD

If you want to source the highest quality, full-spectrum CBD in South Africa, don’t hesitate to browse through the selection available through online shop. You can rest assured that all products contain exactly what’s on the label, including below 0.2% THC. This means that you or your pet will absolutely not experience any psychoactive effects (for example, euphoria or feeling “high”).

Work with your doctor or vet to determine how much CBD to take for the best results. Want to know more? Read about us or consult our CBD glossary!